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Guides through decision to stop kidney dialysis for kidney failure. Covers key factors in decision. Covers benefits and risks. Discusses what happens after dialysis is stopped. Offers interactive tool to help you make your decision.

Advance Care Planning: Should I Stop Kidney Dialysis?

You may want to have a say in this decision, or you may simply want to follow your doctor's recommendation. Either way, this information will help you understand what your choices are so that you can talk to your doctor about them.

Your options

Before you decide to stop kidney dialysis, talk with your
doctor about your chances of getting a kidney transplant.

Key points to remember

You may feel better on dialysis than you did
before you started treatment. But if you have side effects (such as appetite
changes), or if you start to have other problems, you may feel that continuing
dialysis is too hard.

If dialysis lets you do the activities you
enjoyed before, you may feel that it hasn't changed your daily life that much.
You may feel this way even if you can't do all of your old activities. Or you
may feel that your quality of life on dialysis is not good.

Your
diagnosis of kidney failure may force you to rethink your goals for your
future. If you feel that your life has been rewarding and that you have met
many goals, you may feel okay about stopping dialysis. But if you have goals
you have not yet met, you may want to continue dialysis.

Most
people die within weeks of stopping dialysis. If you choose to stop dialysis,
you should be ready to put your personal, financial, and legal affairs in
order. You may want to continue dialysis if you aren't ready to face these
issues.

Clearly state your wishes to your family. If you decide to
stop treatment, will your family understand your reasons? Do they support your
decision to continue (or stop) treatment?

Dialysis is a process that filters waste from your
blood when your kidneys can no longer do the job. When you have kidney failure,
you may have either
hemodialysis or
peritoneal dialysis.

In the United
States, 25 out of 100 people with kidney failure end up choosing to stop
dialysis.1 This means that 75 out of 100 choose to
continue dialysis.

In a study of people who chose to stop
dialysis, 85 out of 100 were judged by their loved ones or caregivers to have
had a good death.1 About half of the people in the
study had pain on their last day of life, and of those people, the pain was
thought to be severe in only a small number of them.

Most people
who stop dialysis die within a few weeks. As death nears, you may:

Feel sleepy and weak. You may
sleep more and need help with walking, bathing, and using the toilet.

Have changes in breathing. You
may have periods of rapid breathing and periods of no
breathing.

See and hear differently. You may see or hear things that no one else
does.

Be less hungry. You may eat and
drink less than normal.

See changes in your urine and stool. Your urine may become dark brown or dark red, and stools
may be hard to pass.

Feel temperature changes. You may sometimes feel very hot and at other times feel
very cold.

Lose interest in daily life. You may lose interest in the outside world and the details
of daily life, including the day or time.

You may have other changes related to kidney failure.
Talk with your doctor about what to expect as your death nears. A dialysis
center can also help with end-of-life planning.

Whether you
decide to continue or stop dialysis treatment, take the time to let others know
your wishes about your care. You can use a legal document called an advance
directive to make sure that you get the medical treatment you want.

If you
have been getting regular dialysis, and if a kidney transplant is not an option
for you, stopping dialysis may:

Give you more time each day to spend with
friends and family instead of going to regular dialysis treatments.

Allow you to eat and drink what you want in the time you have
left. You may welcome this if your diet has been limited while you have been on
dialysis.

Reduce problems that come with regular dialysis,
such as infection or clotting of the
dialysis access.

Encourage you to talk
with your loved ones about end-of-life goals and wishes.

If you decide to stop dialysis, health professionals who
provide end-of-life care can help you have the highest quality of life
possible. This may be done through
hospice care. Hospice offers the chance to think about
personal goals, relieve pain, and take care of your emotional and spiritual
needs.

Most
people die within a few weeks after they stop dialysis. Stopping dialysis may
force you to think about emotional issues, such as broken relationships, money
problems, or a fear of dying. Facing these issues may help you and your family
work out problems. But thinking about and dealing with them can be very
hard.

If you choose to stop kidney dialysis, you may need the
support of a team of end-of-life care professionals, such as a
hospice team. But you may not want to have a lot of
people involved in your care. If this is the case, allowing others to help may
be hard for you.

Dialysis will keep you alive, but it is not a cure for kidney failure.
Dialysis affects:

What you eat. If you
are on peritoneal dialysis, you may need to eat a high-protein diet. If you are
on hemodialysis, you may need to eat less salt and limit foods with potassium
and phosphorus. You may also need to drink less water and other fluids if you
have a low level of sodium in your blood.

Your time. Dialysis affects how you spend your time. Your activities must be
scheduled around your treatment. Hemodialysis must be done 3 times a week for 3
to 4 hours each time. Peritoneal dialysis must be done daily.

Your freedom. You may become
dependent on others to help with your dialysis treatment. If you are getting
hemodialysis at a dialysis center, you may have many health professionals
working with you to provide your treatment. You may need family or friends to
take you to or help you with your treatments.

Travel. When you're on dialysis, travel needs to be carefully
planned. If you are on hemodialysis and plan to travel, you will need to find a
dialysis center away from home.

Personal stories about kidney dialysis

These stories are based on information gathered from health professionals and consumers. They may be helpful as you make important health decisions.

I've been on
regular hemodialysis for the past 5 years. When I first started, I felt good
and my activities were not limited. I was diagnosed with heart failure 2 years
ago. Since then, my physical health has deteriorated. My doctor and I have
discussed the possibility of kidney transplant, but because of my deteriorating
health, we feel this would not be a good option. My preference is to stop
dialysis and receive hospice care. I'm tired of not feeling good and want to
die comfortably.

Georgia, age 81

I've had family members receive dialysis
because of kidney failure. In fact, my aunt told me I would hate dialysis
because she saw how miserable my grandmother was when she received dialysis
over 30 years ago. Dialysis has changed so much since then. I started
hemodialysis 4 years ago and have felt fine. In fact, I feel better than I did
before starting dialysis! There certainly are diet changes, and sometimes my
dialysis schedule is not convenient. But I feel these are small prices to
pay for feeling better. I'm awaiting a kidney transplant. Although I look
forward to the day when I won't need dialysis, I wouldn't consider stopping.

Marco, age
45

I have diabetes that has been very
difficult to control. I received a kidney transplant 20 years ago. Two years
ago, my kidneys began to fail and I started kidney dialysis. Even with
dialysis, I have not felt good. Even with another kidney transplant, there is
no guarantee that I will feel good again. I have had problems with fluid
retention and my appetite is poor. I am tired of diet restrictions and the
limitations of dialysis. I have discussed my wish to stop dialysis with my
family and doctor, and they have been supportive.

Max, age 49

I started
dialysis 3 years ago when my chronic glomerulonephritis progressed to kidney
failure. Even on daily peritoneal dialysis, I lead an active and productive
life. I work full time and travel a lot. Even though dialysis requires
organization, I don't feel that it negatively impacts my life. I feel good most
of the time. At this point in my life, I wouldn't consider stopping dialysis.

Debbie, age
36

What matters most to you?

Your personal feelings are just as important as the medical facts. Think about what matters most to you in this decision, and show how you feel about the following statements.

Reasons to stop kidney dialysis

Reasons to continue dialysis

I'm ready to face my death and let my illness take its course.

I'm not ready to die.

More important

Equally important

More important

I'm not happy with my quality of life.

I feel that my quality of life is okay right now.

More important

Equally important

More important

Meeting my remaining life goals is not a priority for me.

I feel that dialysis can give me enough time to meet my remaining goals.

More important

Equally important

More important

I don't want to keep relying on others for help with my dialysis treatments.

It doesn't bother me to rely on others for help.

More important

Equally important

More important

My other important reasons:

My other important reasons:

More important

Equally important

More important

Where are you leaning now?

Now that you've thought about the facts and your feelings, you may have a general idea of where you stand on this decision. Show which way you are leaning right now.

Stopping dialysis

Continuing dialysis

Leaning toward

Undecided

Leaning toward

What else do you need to make your decision?

Check the facts

1.

In some cases, stopping dialysis could improve my quality of life.

TrueYou're right. If you start to have side effects or other problems, you may feel that continuing is too hard. Stopping may make you feel better.

FalseSorry, that's not right. If you start to have side effects or other problems, you may feel that continuing is too hard. Stopping may make you feel better.

I'm not sureIt may help to go back and read "Compare Your Options." If you start to have side effects or other problems, you may feel that continuing is too hard. Stopping may make you feel better.

2.

After I stop dialysis, I will have several months to get ready for my life to end.

TrueSorry, that's not right. Most people die within weeks of stopping dialysis. You should be ready to put your personal, financial, and legal affairs in order.

FalseYou're right. Most people die within weeks of stopping dialysis. You should be ready to put your personal, financial, and legal affairs in order.

I'm not sureIt may help to go back and read "Get the Facts." Most people die within weeks of stopping dialysis. You should be ready to put your personal, financial, and legal affairs in order.

3.

If I decide to stop dialysis, it's important that my family understand my reasons.

TrueYou're right. It's important to clearly state your wishes to your family, so that they understand your reasons for stopping or continuing dialysis.

FalseSorry, that's not right. It's important to clearly state your wishes to your family, so that they understand your reasons for stopping or continuing dialysis.

I'm not sureIt may help to go back and read "Get the Facts." It's important to clearly state your wishes to your family, so that they understand your reasons for stopping or continuing dialysis.

You may want to have a say in this decision, or you may simply want to follow your doctor's recommendation. Either way, this information will help you understand what your choices are so that you can talk to your doctor about them.

Advance Care Planning: Should I Stop Kidney Dialysis?

Here's a record of your answers. You can use it to talk with your doctor or loved ones about your decision.

Get the facts

Compare your options

What matters most to you?

Where are you leaning now?

What else do you need to make your decision?

1. Get the Facts

Your options

Continue kidney dialysis, which will allow
you to live longer.

Stop kidney dialysis, which will allow death to
occur naturally.

Before you decide to stop kidney dialysis, talk with your
doctor about your chances of getting a kidney transplant.

Key points to remember

You may feel better on dialysis than you did
before you started treatment. But if you have side effects (such as appetite
changes), or if you start to have other problems, you may feel that continuing
dialysis is too hard.

If dialysis lets you do the activities you
enjoyed before, you may feel that it hasn't changed your daily life that much.
You may feel this way even if you can't do all of your old activities. Or you
may feel that your quality of life on dialysis is not good.

Your
diagnosis of kidney failure may force you to rethink your goals for your
future. If you feel that your life has been rewarding and that you have met
many goals, you may feel okay about stopping dialysis. But if you have goals
you have not yet met, you may want to continue dialysis.

Most
people die within weeks of stopping dialysis. If you choose to stop dialysis,
you should be ready to put your personal, financial, and legal affairs in
order. You may want to continue dialysis if you aren't ready to face these
issues.

Clearly state your wishes to your family. If you decide to
stop treatment, will your family understand your reasons? Do they support your
decision to continue (or stop) treatment?

FAQs

What should you know about stopping dialysis?

Dialysis is a process that filters waste from your
blood when your kidneys can no longer do the job. When you have kidney failure,
you may have either
hemodialysis or
peritoneal dialysis.

In the United
States, 25 out of 100 people with kidney failure end up choosing to stop
dialysis.1 This means that 75 out of 100 choose to
continue dialysis.

In a study of people who chose to stop
dialysis, 85 out of 100 were judged by their loved ones or caregivers to have
had a good death.1 About half of the people in the
study had pain on their last day of life, and of those people, the pain was
thought to be severe in only a small number of them.

Most people
who stop dialysis die within a few weeks. As death nears, you may:

Feel sleepy and weak. You may
sleep more and need help with walking, bathing, and using the toilet.

Have changes in breathing. You
may have periods of rapid breathing and periods of no
breathing.

See and hear differently. You may see or hear things that no one else
does.

Be less hungry. You may eat and
drink less than normal.

See changes in your urine and stool. Your urine may become dark brown or dark red, and stools
may be hard to pass.

Feel temperature changes. You may sometimes feel very hot and at other times feel
very cold.

Lose interest in daily life. You may lose interest in the outside world and the details
of daily life, including the day or time.

You may have other changes related to kidney failure.
Talk with your doctor about what to expect as your death nears. A dialysis
center can also help with end-of-life planning.

Whether you
decide to continue or stop dialysis treatment, take the time to let others know
your wishes about your care. You can use a legal document called an advance
directive to make sure that you get the medical treatment you want.

What are the benefits of stopping dialysis?

If you
have been getting regular dialysis, and if a kidney transplant is not an option
for you, stopping dialysis may:

Give you more time each day to spend with
friends and family instead of going to regular dialysis treatments.

Allow you to eat and drink what you want in the time you have
left. You may welcome this if your diet has been limited while you have been on
dialysis.

Reduce problems that come with regular dialysis,
such as infection or clotting of the
dialysis access.

Encourage you to talk
with your loved ones about end-of-life goals and wishes.

If you decide to stop dialysis, health professionals who
provide end-of-life care can help you have the highest quality of life
possible. This may be done through
hospice care. Hospice offers the chance to think about
personal goals, relieve pain, and take care of your emotional and spiritual
needs.

What are the risks of stopping dialysis?

Most
people die within a few weeks after they stop dialysis. Stopping dialysis may
force you to think about emotional issues, such as broken relationships, money
problems, or a fear of dying. Facing these issues may help you and your family
work out problems. But thinking about and dealing with them can be very
hard.

If you choose to stop kidney dialysis, you may need the
support of a team of end-of-life care professionals, such as a
hospice team. But you may not want to have a lot of
people involved in your care. If this is the case, allowing others to help may
be hard for you.

What are the risks of continuing dialysis?

Dialysis will keep you alive, but it is not a cure for kidney failure.
Dialysis affects:

What you eat. If you
are on peritoneal dialysis, you may need to eat a high-protein diet. If you are
on hemodialysis, you may need to eat less salt and limit foods with potassium
and phosphorus. You may also need to drink less water and other fluids if you
have a low level of sodium in your blood.

Your time. Dialysis affects how you spend your time. Your activities must be
scheduled around your treatment. Hemodialysis must be done 3 times a week for 3
to 4 hours each time. Peritoneal dialysis must be done daily.

Your freedom. You may become
dependent on others to help with your dialysis treatment. If you are getting
hemodialysis at a dialysis center, you may have many health professionals
working with you to provide your treatment. You may need family or friends to
take you to or help you with your treatments.

Travel. When you're on dialysis, travel needs to be carefully
planned. If you are on hemodialysis and plan to travel, you will need to find a
dialysis center away from home.

As you near death, you'll face
end-of-life issues that may be hard to deal with.

Personal stories

Are you interested in what others decided to do? Many people have faced this decision. These
personal stories
may help you decide.

Personal stories about kidney dialysis

These stories are based on information gathered from health professionals and consumers. They may be helpful as you make important health decisions.

"I've been on regular hemodialysis for the past 5 years. When I first started, I felt good and my activities were not limited. I was diagnosed with heart failure 2 years ago. Since then, my physical health has deteriorated. My doctor and I have discussed the possibility of kidney transplant, but because of my deteriorating health, we feel this would not be a good option. My preference is to stop dialysis and receive hospice care. I'm tired of not feeling good and want to die comfortably."

— Georgia, age 81

"I've had family members receive dialysis because of kidney failure. In fact, my aunt told me I would hate dialysis because she saw how miserable my grandmother was when she received dialysis over 30 years ago. Dialysis has changed so much since then. I started hemodialysis 4 years ago and have felt fine. In fact, I feel better than I did before starting dialysis! There certainly are diet changes, and sometimes my dialysis schedule is not convenient. But I feel these are small prices to pay for feeling better. I'm awaiting a kidney transplant. Although I look forward to the day when I won't need dialysis, I wouldn't consider stopping."

— Marco, age
45

"I have diabetes that has been very difficult to control. I received a kidney transplant 20 years ago. Two years ago, my kidneys began to fail and I started kidney dialysis. Even with dialysis, I have not felt good. Even with another kidney transplant, there is no guarantee that I will feel good again. I have had problems with fluid retention and my appetite is poor. I am tired of diet restrictions and the limitations of dialysis. I have discussed my wish to stop dialysis with my family and doctor, and they have been supportive."

— Max, age 49

"I started dialysis 3 years ago when my chronic glomerulonephritis progressed to kidney failure. Even on daily peritoneal dialysis, I lead an active and productive life. I work full time and travel a lot. Even though dialysis requires organization, I don't feel that it negatively impacts my life. I feel good most of the time. At this point in my life, I wouldn't consider stopping dialysis."

— Debbie, age
36

3. What matters most to you?

Your personal feelings are just as important as the medical facts. Think about what matters most to you in this decision, and show how you feel about the following statements.

Reasons to stop kidney dialysis

Reasons to continue dialysis

I'm ready to face my death and let my illness take its course.

I'm not ready to die.

More important

Equally important

More important

I'm not happy with my quality of life.

I feel that my quality of life is okay right now.

More important

Equally important

More important

Meeting my remaining life goals is not a priority for me.

I feel that dialysis can give me enough time to meet my remaining goals.

More important

Equally important

More important

I don't want to keep relying on others for help with my dialysis treatments.

It doesn't bother me to rely on others for help.

More important

Equally important

More important

My other important reasons:

My other important reasons:

More important

Equally important

More important

4. Where are you leaning now?

Now that you've thought about the facts and your feelings, you may have a general idea of where you stand on this decision. Show which way you are leaning right now.

Stopping dialysis

Continuing dialysis

Leaning toward

Undecided

Leaning toward

5. What else do you need to make your decision?

Check the facts

1.
In some cases, stopping dialysis could improve my quality of life.

True

False

I'm not sure

You're right. If you start to have side effects or other problems, you may feel that continuing is too hard. Stopping may make you feel better.

2.
After I stop dialysis, I will have several months to get ready for my life to end.

True

False

I'm not sure

You're right. Most people die within weeks of stopping dialysis. You should be ready to put your personal, financial, and legal affairs in order.

3.
If I decide to stop dialysis, it's important that my family understand my reasons.

True

False

I'm not sure

You're right. It's important to clearly state your wishes to your family, so that they understand your reasons for stopping or continuing dialysis.

Decide what's next

1.
Do you understand the options available to you?

Yes

No

2.
Are you clear about which benefits and side effects matter most to you?

Yes

No

3.
Do you have enough support and advice from others to make a choice?

Yes

No

Certainty

1.
How sure do you feel right now about your decision?

Not sure at all

Somewhat sure

Very sure

2.
Check what you need to do before you make this decision.

I'm ready to take action.

I want to discuss the options with others.

I want to learn more about my options.

3.
Use the following space to list questions, concerns, and next steps.

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How this information was developed to help you make better health decisions.